Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Monday, October 31, 2011

Steve Jobs "Oh Wow, Oh Wow": God's Love and Our Mission in Life

There's no doubt, that Steve Jobs was an amazing man, who's influence is going to last a long time. That's right, you can call him the "Einstein of Technology," because while he didn't invent it, much like Big Al did with Physics, he improved it and brought it to the masses. While both were controversial figures in some regards, Jobs was able to turn Apple into a proven commodity, made computers user friendly, along with changing the music industry and how special needs children are able to communicate. Successful, there's no denying, and one could also say he was driven. The past week there have been a lot of accolades, rightfully deserved, but Steve Jobs despite being put on a pedestal of sorts, was a human being just like you and me. That's right, an imperfect soul, who with his intelligence and competitive streak, was able to be a name that all around the world know.

He's also an example of resilience. Fired from his own company, he certainly made a comeback with devices like the ipod, iphone, and ipad. His obituary was revealing for such a private man, because in his last moments of life, he looked at his family, and beyond them saying "Oh wow, oh wow." What does that mean? It can be left open for interpretation, some might say it was his brain's lack of oxygen or braincells firing down, but I believe in full conviction, that he saw "the other side." Its up for you to infer what this means, but plenty of hospice worker's can attest to this. Patients who are not drugged talking about events with relatives that no one until later knows about, or glimpses of Heaven, as outlined by an author whom wrote a beautiful and compelling book on this subject. She was a nurse in a hospice, and while I believe in a higher power whom loves us, its up to us to make that decision, and live accordingly.

I am, not as smart or ambitious as Steve Jobs. Nor do I have his business saavy, nor obviously his expense account, as I drink my "Generic brand coffee," or "Mystery Meat" from a box. Yet I am happy. Even with the loss of my boy almost two years ago, from an Angelman Syndrome related seizure, I am ultimately satisfied. Does this mean that I wear a "Joker" like expression, that Jack Nicholson had on his face years ago, in the original Batman? Nope, but it means being content that my boy is with a loving God, who has certainly challenged our family, but so many others as well. "Squeeze but doesn't choke." Find me one religious text, that says that life is going to be simple, or fair. There's plenty of time, feel free to go through the Bible, or any other book trying to find such information.

Life is a struggle. There are good days and bad, but it ultimately comes down to what do you want from this life? As we approach the two year anniversary of the night that my boy went to Heaven, a lot of people have said my actions are heroic. They are not. I am merely a simple man, a father who made a promise after meeting a special man after a rather angry prayer, who wants to find a cure for seizures. Other than that, a day of fishing, a good bike ride, or just enjoying a trip in the woods is all that really matters. The Vanderbilt Kennedy Center Angelman Seizure Research Project, and other epilepsy related foundations, are severely below the funding they need for a cure. That's the next logical step, because while efforts have made a dent in the pain of those whom are affected by them, whether its generalised epilepsy, Rett Syndrome, Mowat Wilson Syndrome, CDKL5, or Angelman Syndrome, seizures still affect so many people's lives. They sap their productivity, make their lives more difficult, impair cognitive abilities, cause ambulance and ICU visits that have parents right now sitting in a chair by their little girl or boy's bed, wondering, crying, questioning. These parents are stressed out beyond belief, not sleeping, having to contend with the struggles of life that are already challenging to anyone, and have what Harry Truman so eloquently described as "having a barn fall upon him," when being told about having to succeed FDR on his death.

Each of us has a limited amount of days. Its up to us, what do we want to do with them? Sometimes its good to just "kick back a bit," or recharge the batteries, before facing our next battle. I wish that I could say that seizures, were a one shot magical pill, and voila they just disappeared. There are millions of people around the world, that would be thrilled by such news, but we aren't there yet. However, I am convinced, that with more churches and other faith based institutions, folks who want to walk the line, and stand up proud, convinced that God's plan for them is to knock seizures out of the park, we can get this done. Before Tommy's passing, I had no idea that I could do guest sermons, or go to businesses, and approach them about how to get involved. Yet, with prayer and guidance, and making the right connections, a starting line has been established. I don't know how this is going to end, its not up to me, but what I can control is the resilience of "Brother Bill," who's valuable lesson on my greatest day of pain, is that very value that we each have in our hearts.

The human spirit is remarkable. We are kicked, broken, and beaten in so many ways. Yet we continue to stand up. I miss Tommy everyday, as other parents who've lost their children, feel the same way. It is unfair, there's no denying that, but its up to them to ultimately decide, A. Do I just be miserable and live out the rest of my days, or B. Do I take the painful lesson that I've experienced, including placing the dirt on their child's grave, or spreading of their ashes, and get through, not over, and put on some boots and make something happen? Each person has this spark, this divine love that has the endurance to go the distance, just like how Albert Einstein and Steve Jobs had the brains and ambitions to be so prominent in our lives. True, we might not make the newspaper, become famous, or rich, but by God we can claw through the trenches, and come out champions, with the pain as the motivator to do the right thing. November 2009 is the month my Tommy passed away, "oh wow, oh wow." Its also the month of epilepsy awareness. Coincidence? Perhaps. Yet look at all of the connections in your life, and at the sky on a clear night, and rarely is anything due to mere chance. Its up to each and every single one of us, right here and right now.

Saturday, October 29, 2011

A Special Needs Diagnosis Changes Things, and Here's to You Dad's

It is so devastating for a mom, dad, grandparent, brother, sister, cousin, or a family friend, to hear that someone they know has been labeled "Special Needs." This is quite a large wheel, considering the amount of conditions that fall under this, so imagine a whole bunch of spokes, that is similar to the autism spectrum. Obviously, we shall require a bigger wheel that the 275-70-18 that goes on a pickup truck, and a monster truck tire might be appropriate in this case. Us guys love those vehicles, with their powerful engines, loud sounds, and ability to crush cars with a single leap. Yet what are we supposed to do, when our souls are? When a doctor tells us, your little girl or boy isn't going to say a word, is intellectually disabled, or may never walk?

Having been in those shoes, that is one of the most painful events you can go through. All of those dreams, of seeing your little one play baseball, or to go fishing and hunting, are just thrown out the window. Your watching your child grow up to have that sneer you do, perhaps that sense of humor that had you end up in the Principal's office on a regular basis, that passion for the outdoors or watching a football game, are just gone. Now your reality is one that sucks, point blank, and for sometime its going to. Yet, its up to you with what you want to do with these words. The best thing you can do, the very essence of a man, is to take your lumps, and support your girlfriend or wife through these painful times. At the same time, realize you are suffering too, and that its okay to cry, it is alright to ask others for help, and also there's something to be said about "taking a step back."

You've been given a bleak forecast, but you haven't been given a death sentence. Right now, even though these dark clouds hover right around your head, keep this in mind. This is beyond your control, and the breathtaking speed of medical and technological advances, offer a lot more than previous generations could ever have. Groups on facebook and elsewhere are taking off, regardless of the condition, and your child is much more likely to be accepted by your community than in years past. We have come a long way. Is there still more to be done? Of course, but you can be a part of that change. So what about the baseball, the chances to land that Largemouth Bass, or the hunting trip for a big buck that will be the toast of your days?

Some of those may be possible. Adaptive sports are becoming much more popular, and seeing a special needs child smile, at a fish is a definitive possibility. Is this ideal? Nope, but its better than not happening at all. You might be surprised, as you can find activities that you will love, that your little girl or boy will. A lot of special needs kids love water. How about a day of swimming at the pool, or even in the ocean? Those are always possibilities, as are outdoor excursions. Many amusement parks and other places, such as ski resorts, allow you to go first in line, and to ride attractions for a second go around. Due to legislation like the Americans with Disabilities Act, and also the compassion of many, there are more opportunities than ever before for Dad's of special needs children.

You are going to feel the crushing of your soul, when you get the diagnosis, but it is my hope that you shall have some reasons for a smile as well. Its going to take time to accept what you are contending with, because I will never forget looking at my son Tommy's eyes, and thinking "those doctor's don't know what they are talking about." Yet they did. Their tests were right, and Tommy loved playing in the Chesapeake Bay. Those days were full of joy, and he smiled on the docks, as I attempted to catch fish in a small pond in the Shenandoah Valley. Perhaps he knew something I didn't, that I just wasn't coming home with a full bucket on that day. In order to increase the opportunities for special needs children, Dads' and Mom's, brothers and sisters, family members and friends are going to continue to have to generate awareness. We've done so much, but there's still a line that has to be crossed, where all people, regardless of ability have the respect of all. Dad's have an important role to play in this, and while it is easy to be angry over such news, the best thing that can be done is to turn that anger into a positive, by going the extra mile and participating in fun activities with your child. Life is sacred, and each day is a blessing.

Tuesday, October 25, 2011

The Angel Quilt Project: Fabric of our Loves, and Our Mortality

Holding your child's hand, as they stop CPR is the most painful event, of my life and I still think of it often. Walking down that hallway after the ambulance ride, knowing that my son indeed would be dead, was akin to the green mile. I didn't like walking down that corridor, which wasn't long, but felt that way. As I walked into that ER room, seeing my son with his eyes open, and a trach tube in his neck, and having snapped at the paramedic who got me, I knew this was it. The rescue personnel and doctors and nurses, they had done all they could, and I knew the harsh reality. A woman's voice told me, "Okay Dad, hold on to his hand as we stop CPR." I don't know if it was the nurse, or a social worker who was an angel in every regard, but they stopped and the room emptied of people. I was alone with my beautiful little five year old boy, until my wife, and the grandparents and my brother showed up that dreadful night of November 2009.

Trembling, crying, and in a way living this experience as if I was not a part of it, I don't remember much of this night. I remember being at home thinking, my son is all alone, in the morgue. The anger of a red book on grief, when my son wasn't with us was palatable, and tension, and every emotion but mostly tears, seemed to be the order of that night. There was the road of guilt, pain, sadness, and anger that had to be dealt with later, but at the time, it was mostly shock. How could I be that guy? How in 2009, with modern medicine, in an area with phenomenal resources, could my five year old son be dead. Dead!Dead! Dead! Gone forever! I would never see him again. Not only until he was in his coffin, which is an experience I still cry about today, would I see my little blue haired, blonde haired boy who taught our entire family so much.

Tommy's clothes bothered me, items that he loved caused such pain, such tears to flow. I can't count how many times, that I just simply walked away, unable to take it all in. Coach Tony Dungy, of the Indianapolis Colts and Tampa Bay Bucs says it best about losing his child, "I'm still grieving." That is the case, as my family and I will never get over Tommy's passing. Yet we shall get through it. A good friend named Darren, from the land of Oz, has a description that I'm going to borrow from him, and I hope he's okay with it. "Journey." No, not the 1980's band with the bad hair, but that's what life is, a journey. Darren found out about Tommy's passing, as he's also an "angel dad," and that night, from across the world, got parents of Angelman Children to sign messages of love and support, and they arrived at his memorial service.

It meant more than words can describe, and I still read it from time to time. This provides a level of peace, to know that others felt the loss of Tommy, and after a path of many twists and unforseen turns, my faith is stronger than ever before. I miss him all of the time, everyday I think about my little boy. Yet I have no doubt that God will allow me to see him again, and that he's in the Lord's loving palms, as are all children, who are completely innocent of anything of this fishbowl of a world. The Angelman Quilt Project, has led to a lot of smiles and tears. Do I wish it didn't have to exist? Of course, yet I am thankful that it does. This is an effort, led by Angelman parents raising funds for fabrics, creating these quilts that have the "angel" whom passed away from an accident or seizure, and is given to the parents whom miss their little girl or boy.!/pages/The-Angel-Quilt-Project/267961783227848. Please "like" this project, and if you can read more there. Its proof that we are all connected, as while these parents have an uphill climb, they will get through these trials and tribulations. They are not going to be easy by any means, but with each day beginning anew, there are still lessons and reasons to "carry on." The Angel Quilt Project delivers these quilts to families in profound grief, and are tangible objects, that can be held or placed on a wall to remember that their child meant a lot to them, and so many more. Each quilt has their little one, surrounded by fifty other children with Angelman children, to show the support and circle of life that we are all a part of, and that even though their pain is great, they are not alone. That's the key to a lot of it, because as I have walked around my son's cemetery, I realize that there are so many more in my heavy shoes, that have had to experience this pain, an although I am saddened by this, it also is a sign that there are others out there that need to be supported.

That's where you can come in. This quilt project, for just $10 will guarantee a patch of an angel child, to be sewed on to these quilts. Any extra funds are going to Vanderbilt University's Kennedy Center Angelman Seizure Project, so good does come from pain. While we all hope and pray that no other angels will be taken before their parent's time, when not if is sadly the reality. Children with this condition, like Tommy, are champions in every regard with their love, their laughs, their smiles, and also their determination to never give up in the face of so many challenges. To those angels, like Tommy who are now with our loving creator, you are at peace. To their families, this project is proof of the love around you, and even though you are in pain, and will be for the rest of your lives, there is still more good to experience. You will everyday think about your little one, and there will be some tears, but there will also be some smiles and laughter as well. Hold on to those happiest of times, and be thankful for those moments, because life is fleeting and each day is a blessing. Thanks to all whom have supported our family during our darkest of hours, we miss you Tommy, and are proud to support the Angel Quilt Project at!/pages/The-Angel-Quilt-Project/267961783227848.

Wednesday, October 19, 2011

Thanks to Another Angel, an Angel is Remembered for His Love of Jello

The other day was a painful one. Well, all are, but some are worse than others, as I miss my son Tommy, who passed away from an Angelman Syndrome related seizure in 2009 at age 5. "Porky" as he was called, due to his rather linebacker like stature, walked tall his last week of life. So many are proud of him, and while he never spoke a word, his legacy lives on. Even with the loss of a child, I am still a very happy man, and feel blessed to have a wife that I love, a family that is dear, and many good friends along this journey. Some of them I have yet to meet, but look forward to that day, when we can sit down for that beer and perhaps a cigar.

A posting on the Angelman Syndrome Foundation's facebook board (ASF that is at got me thinking. In fact, it not only did that, but it provided a smile and a laugh, of which Tommy was known for. Another angel mom, who I briefly had the chance to meet at an Angelman Walkathon in Columbia, MD, had a discussion going about what kinds of foods "angels" as children and people with Angelman Syndrome are called. This was an excellent topic, and an important one, as its good to share strategies, and find out what kind of foods might help with chewing difficulties or nutritional values. Yet this post also caused that grin, because it brought back a very happy memory. This angel mom touched a person from something that was helpful, but went much further than that.

I thought instantly, "Jello." As a kid, Bill Cosby was always on the television, selling what was one of my favorite foods. That was a good memory, but what really got the teeth to show, and the lips to curl into such a huge smile, was that I used to make Jello for Porky on a regular basis. All of us have different gifts, and weaknesses. One of the latter ones I suffer from is cooking. Yes, I've almost blown up a Charbroil Grill that scared the heck out of contractors working on my house, there have been uneven cakes, and I'm amazed the fire department hasn't been dispatched while cooking taco's in the kitchen. However, I was able to make Jello, and Tommy just loved it. He would eat it with a gusto of spirit, and his favorite one was the orange. Sure, I tried the other ones such as cherry and grape, but the orange one was certainly his Jello of choice.

Walking in the kitchen, I laughed thinking about those times making this gelatin substance. In a way Jello is like that fruitcake that makes the rounds, it certainly is an odd food. Yet I thought about this even further, such as the grocery trips just to get orange jello, and the joy of making this for Tommy. His eyes would brighten up when he saw this, and he just ate this food that I'm not sure is on the USDA pyramid, with such love. I think I'm going to make some Jello later this week, in honor of Porky. Its been almost two years since he departed this Earth, and he's missed everyday. Yet this memory, provided a lot of hope, and a lifting up of spirits. Its these small things in life, that we must cling on to, even in times of despair that can make all of the difference. Something as simple as Jello. Life is an interesting adventure.

Tuesday, October 18, 2011

Hope Reigns Supreme: Order a Decal or a Shirt and Help Harli Prove Even More This is where you need to go, to help a young lady with Angelman Syndrome, fulfill her dreams, and show her loving family even more of what she is capable of. She has already made a lot of progress, and in order to help her with the PATH, Planning Alternative Tomorrows with Hope foundation that has been set up in her honor, please order a shirt from here before October 31st. These help Harli, who has shown exemplary skills, including communication, for an "angel," and she is much loved. Her mom Tami is a go-getter who doesn't know the meaning of quit, and you could say, that this has been inspired by Harli, who knows love, advancing forward, and showing what the human spirit is capable of.

Wouldn't you like a cool t-shirt, that says "Hope Reigns Supreme", in a variety of colors, with a link to FAST(Foundation for Angelman Syndrome Therapeutics) on the front? These are some good looking shirts, and if you order by December 31st, you will not only be "styling and profiling", but also showing your love for Harli and all angels by wearing this shirt. I can't wait to order one, and hope others shall as well, and the days for all of us procrastinators is soon up. Now is the time, so please go to, and help Harli get the chance to enjoy gardening, recreational opportunities that have been so beneficial for her successes, and have also led to joy for so many other people as well. If you aren't in the market for a shirt, consider a decal or other items, that are available from this store, that is built with love, and for a young lady that is the very definition of resilience. Let her have more opportunities for the art projects that she loves, help her with devices that allow her to live the "purpose driven life," that's so eloquently described in a book with that title.

"Hope Reigns Supreme," is so true. That's something that cannot be always held on to, or bottled, but it is powerful. We are closer than ever to a cure for seizures and Angelman Syndrome, than ever before. Until that day occurs, and God willing it shall, let's all step it up for Harli, and allow her to enjoy life to the fullest. You aren't only helping Harli, but so many who's lives she has touched, along with her family that cares so deeply about her, and only wants the best. At the same time, you can put on a shirt with a message that is true, and know that you've done your part, to bring a bit of hope to Harli. Please visit You will find love there, a quick checkout process, and will have a shirt that stands out, maybe not as much as Harli does with all of her kindness, but your compassion will most certainly be evident.

Saturday, October 15, 2011

Friday Night Lights, A Walk Around the Football Field, Eyes on the Past and Future

Last night, I attended the homecoming game for my high school, Fairfax, that's located in Northern Virginia. It was a lot of fun going with my father, watching the ol' team play sloppily but win, and to see a classmate friend of mine. Eating the $1 popcorn and the cans of Coke that probably were in the snack bar in the mid 90's, are still being served, and you cannot beat paying only $5 for this kind of entertainment. In many ways, it was a stroll down "memory lane," and for those who haven't had the chance, I hope you get to, as last night was a lot of joy but it also provided a few moments of reflection. These are good, and as I walked the same areas I did as a high school student, I looked back at the past, and the future.

To get to the snack bar, you have to walk all the way around the gridiron, and I saw a lot of young faces, people that have their whole future's ahead of them. My son's grave lies less than five miles from here. Smiles and laughter were visible, and homecoming queen contestants were hopeful about their dreams of going to college, along with making a difference in the world. Some of their goals were quite amusing, and provided a laugh, knowing that many of them are going to do well, but also life is unpredictable. As I walked the area on the fence, I laughed at this being the place I tried to get for dates, although I was so awkward and socially inept, that I probably couldn't have got a date if I paid for it :). Yet here were these young people, in the prime of their lives, and my son's grave lies just a few minutes down the road. It is a stark contrast to them, here you have young men and women who are just getting started, and a five year old is buried six feet deep under red roses.

These high school kids have dreams. I hope that they are able to achieve them. Yet when looking at the thousands of people, I couldn't help but think, how naive I was about life back then. I also realized I'm getting old. That's okay, as these young people don't have the grey hairs, the lack of hair, or the battle scars that they hopefully don't have to earn. At the same time though, when you think about how many people were there, some of these kids one day are going to have a child with special needs, or contend with the loss of one of their own flesh and blood. A lady yelled at the food counter, impatient with these high schoolers, who seemed to be the very definition of "human cholesterol", at the snack bar. I ordered some popcorn and those sodas, and walked on back. Some of these kids, whom are so happy right now, unless cures occur at a miraculous rate, are going to contend with tragedies in their lives one day.

It was fun watching some fine passing and tackles. No one was seriously hurt during the game, which is a win, regardless of what the score on the boards show. Life is unpredictable though. Many of these homecoming king and queen candidates, along with the high schoolers in attendance, will one day have to contend with a child who has special needs, or perhaps having to put dirt upon their little girl or boy. They walk the sidelines with a wide open future, as truly the world is their oyster, and they haven't seen yet what reality is all about. I hope they are enjoying it, from the bottom of my heart. As I rounded my way up to the stands, and had a near accident trying to climb over a fence to get there, that was another close call. We don't know what lies ahead of us, but all we can do is just hang on, and do the best we can regardless of the circumstances that have been thrown to us. Hopefully it will be a touchdown, and not an interception, because we must remain going for that "first down" regardless of how many challenges are flooding us from every direction.

Thursday, October 13, 2011

Perspective Changes, and a Walk Around Fairfax Hospital

This past week has been frightening at times, as my wife and her mother, were both admitted to the hospital with a serious medical condition. Hospitals by their very nature, aren't places of comfort, although in most cases people do convalesce there from injuries or other illnesses. This week was a fine example of that, as I had conversations with their doctors that caused me to shake inside a bit, and realize how valuable each day is, along with how much I love both of these wonderful people. While they went through the most stress obviously, and a lot of pain, I am glad that they are now home and recovering well. At the same time, there were lessons learned during this experience, as this was the first time I was able to walk around, the places where my son was brought in for the last time.

Tommy passed away in our house, but he was "declared dead" at Fairfax Hospital. This was while I held his hand, and the CPR was stopped. Often I drive by this hospital, and shudder thinking about that horrible night in 2009, and often try to ignore it. Yet this incident forced me to go there, and I walked by the pediatrics ER where all of us cried tears along, with the reality of our little angel being gone took place. As I walked these corridors, I saw plenty of nurses and doctors. I thought about them. What do they feel after these events? How do they get up every day and night, and deal with these situations? They are brave souls, and they have to contend with the throes of pain, right in front of their eyes on a regular basis. They have my admiration, and although I didn't see the social worker that helped us that night, she knows of our love for her.

While I wish I didn't have to return to this hospital in this type of event, I am thankful for it in some ways. Sure, my wife and mother in law suffered, and we are probably going to be switching from the generic food brand to God knows what now. Yet we are lucky. We are blessed. All of us through our various journeys, of this incident, walked out of it with different perspectives. My wife and mother in law, who's a second mom, got a second chance. I gained a new appreciation walking around, looking at folks whom go to work everyday, helping people not only survive but thrive. True I am biased a bit as my Mom is a retired nurse, but this was therapeutic on many levels, being able to walk by the corridors of that awful night, and to look at the artwork painted by school children.

Some days really stink, yet we are blessed. There is always someone who has it worse than you do, and our pain is a shared experience on many levels. Walking by other family members who had loved ones in the hospital, there's no words, but an understanding. Often in the bustle of life away from this building, there isn't, but here it is a weight that is hard to comprehend, unless you are wearing those same shoes. It is a kinship of sorts, and through the quiet prayers in the chapel on site, the various waiting areas, this silence permeates into something that you cannot touch, but you can most certainly feel. The future is unknown, but each day is appreciated, even the ones where everything is upside down. While these are hopefully kept to a minimum, its the good days, that make these ones a bit more bearable.

Saturday, October 8, 2011

The Angel Quilt Project Touches Hearts from Loving Souls

Like facebook? If so check this out This is called the Angel Quilt Project, and it is an effort of love, to those going through immense pain. I've buried my own child, and its something that I would not wish upon, if I had a worst enemy. There's no words that can describe it, other than a knife in your soul. The wind is kicked completely out of you, and there's just this heartwrenching finality, that makes you feel as if you died yourself. It hurt to see that coffin shut on my son. The pain was harsh carrying him out in that same coffin, into a limo to his grave. My soul was tore apart putting dirt down upon his coffin, that was lowered by a pulley system, six feet deep. You aren't supposed to bury your own child, that is not how life works. Yet it is. Its happened to me, and thousands of other parents around the world.

Recently, the Angelman Syndrome family has lost a lot of angels. Each one re-opens wounds, that will never go away. Yet, even with this burden of tears, this sympathy for other parents that I cannot describe, there is hope. A angel mom named Susan, along with a bunch of "angels" whom are quilting right now, are doing something so beautiful that it has led to tears of joy. Its brought some comfort, knowing that those who are going down this road recently or right now, are going to have a quilt of their Angelman child, whom they miss so much, surrounded by a whole bunch of other children with Angelman Syndrome surrounding them. What love could be greater than this? Its something these parents can hold on to, cry and have good memories while touching, and also let's them know that they are not alone.

That's right, alone. Until recently, I had no idea of how often the death of a child occurs. This is even more prevalent in the Angelman Syndrome family, and that's not to scare anyone, its just that these young boys and girls are vulnerable even though they are champions in every regard. Whether its accidents, seizures, or medical complications, these kids have hearts of gold, but due to circumstances beyond everyone's control, they do face health issues. Most angels thankfully live a long life. I am thankful for that, and pray constantly that no other parent of any child, not just a child with AS as its known, has to go through this. Sadly it is a when not an if "proposition.". Yet there are advances, such as what's been going on with FAST(Foundation for Angelman Syndrome Therapeutics) and ASF(Angelman Syndrome Foundations), work, along with what the good people at Vanderbilt's Kennedy Center Angelman Seizure Research Project and others are working on.

That is a beautiful thing. Yet sadly there are going to be angels who gain their wings, much sooner than we wish they would. I visit my son's grave fairly often, and walk around, looking at the marker's of so many other children. Death is an uncomfortable subject, yet it is a reality, as we all have our day etched in stone. Yet, what do we want to do, hide from what is going to happen, or look at it in the eye, and love one another more in really, what is a short period of time regardless if we live for five or one hundred years? The Angel Quilt Project is one way, you can show that love, this passion that we all have in each of our hearts, that will let other families know, that we are with them. Please go to "Like" this page, to show these parents, whom we feel compassion for, know that we are with them. If you can donate a bit of money, or lend a hand to the quilting effort, that would be appreciated. We each have a day, and this project is a way, that we can do our daily turn, for those who will perhaps shed a tear out of the joy, that they know that they aren't alone. That's the worst feeling of all, and knowing you aren't, is a redeeming moment, even when the world surrounding you has crushed your spirit.

Wednesday, October 5, 2011

The 4th Annual Bella Bash: Nashville, TN October 20th: Be There!

For those who have not had the chance to read Regie Hamm's "Angels and Idols" book, by all means pick up a copy, and prepare to cry and be inspired at the same time. This moving book, about the love he and his wife Yolanda share, along with their involvement with American Idol and their children, will have you realize the value of enjoying each day as the blessing it really is. Every year, the Hamm family holds a "Bella Bash," that's named after their daughter Isabella, who has Angelman Syndrome. This is caused by a partial deletion of chromosome 15, it is on the autism spectrum, and "angels" are warm and loving souls, whom deserve our support for helping them achieve their dreams, along with finding ways to give them assistance with seizures and other issues regarding this condition. Would you like to experience the hug of your lifetime, while also being entertained, and supporting a good cause? If so, be sure to attend the Bella Bash in Nashville, Tennessee.

That's right, the heart of music, and also where the love of many will come together on October 20th, 2011 in the fourth annual Bella Bash. Go to for more information, but here you can have fun with the "angels", and support them at the same time. The Hamm family's Angel Wings Foundation, and Vanderbilt's Kennedy Center will be happy to see you there, along with the following acts to see on stage. These include award winning artist Amy Grant, along with Bob Carlisle, Gary Mule Deer, The Martins, Tim Akers and the Smoking Section, and Becka Brown. This event will be held at the inappropriately named "Loveless Barn," but there will be a lot of love and soul there that night. You will see it, you shall feel it. There are no words to describe it, just be sure to be there and experience this passion firsthand. By going to this fun filled event, you shall enjoy a lot of good music, plus helping a cause that is so worthwhile, and those hugs will leave you knowing that you've done more than just done a good turn, but done something spiritually fulfilling.

Come on down to Music City, and enjoy the Bella Bash. Learn about her love, and the love of all angels. You can purchase tickets online, or sponsor an angel at Be sure to also purchase a copy of "Angels and Idols," if you can, so that you can better grasp what Angelman Syndrome is, learn a story that is felt by many of your fellow human beings. Each person has worth and dignity, and although angels are born with a deletion of an important chromosome, their love is second to none. Organizations like the Angel Wings Foundation and the Vanderbilt Kennedy Center are working hard to generate awareness, along with assistance on seizures, and perhaps one day a cure for this. With love to the Hamm family, and all they have done, along with the "angels" that have provided hope along the way, may you enjoy this event, and know what the meaning of true love is.